Really severe rls plus mds

[SevereRLS-4mom]

I recently was able to see my moms records. She has been told she has mds too. Also there is a problem with her blood levels. The doctors cant seem to get her blood levels to go up. She is taking a needle injection every other day. Last night i stayed up with her again cause it was so severe. Sometimes she wants to just die. She hardly sleeps. She only slept 45 minutes yesterday and the day before. According to her records she takes these meds: duxet 30mg, epobel 10000 1.0ml, benexol b12, madopar 125mg, pexola 1mg, gavidcon liquid, d-colefor 20000 i.u., neurontin 800mg.

[Joolsg]

I assume your mum is under a doctor? Where does she live?The FIRST thing she URGENTLY needs to do is find a NEW doctor who is knowledgeable about RLS.

Your mother is on Levodopa AND 2 times the max dose of Pramipexole. That is exactly why her RLS is SO severe. She is suffering drug induced worsening.

She is also on Duloxetine, an anti depressant that triggers/worsens RLS.

So, before I set out any detailed advice on how to.get her safely off these 3 drugs, it would be better to first find a good doctor.

So, tell us where she lives and we'll send some names.

[Marlayna67 in reply to Joolsg]

Oh this makes me so sad for the mom!

[Joolsg in reply to Marlayna67]

Very sad.

[SueJohnson]

You mention Duloksetin hcl - did you mean Duloxetine? If so it makes RLS worse for most. Duxet is the same medicine. A safe alternative is trazodone which treats anxiety and depression.

Pexola (pramipexole) is a dopamine agonist (DA) and madopar acts like one. She needs to come off these as she is already suffering augmentation as 1 mg of pexola is twice the maximum of .5 mg . The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.

In the following advice I will refer to you and interpret that to mean your mother.

For the Madopar ask for 50 mg ones. Then reduce by one 50 mg one every 2 weeks. This should stop her extreme RLS. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end.

After your symptoms have settled then it is time to reduce the pexola. I will refer to pexola as pramipexole in the rest of the advice I give you.

First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so post back here as the advice will be different.

To come off pramipexole, reduce by half of a .125 tablet) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will again suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations.

Normally you would start gabapentin 3 weeks before you are off pramipexole but you are already on 800 mg. It won't be fully effective until you are off it for several weeks. After you are off pramipexole for several weeks increase it by 100 mg every couple of days until you find the dose that works for you.

Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms.

If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

I previously asked if you have checked your ferritin but didn't receive an answer. Have you?

This is very important as improving it to 100 or more can help with the withdrawal.

[restlessstoz in reply to SueJohnson]

Hi Sue, I was just reading this post and didn't know what MDS was. I still don't but from the tiny bit I've read courtesy of Dr Google, it says that : 'Myelodysplastic syndromes (MDS) are a type of rare blood cancer where you don't have enough healthy blood cells.' It made me wonder if this is one of the reasons the RSL was there in the first place as perhaps the ability to absorb/carry iron is affected. It may be that it won't be possible to increase ferritin levels. However, it is very clear that the lady is suffering horrendously and I hope some help can be found for her.

[SueJohnson in reply to restlessstoz]

That's interesting and certainly sounds like a possibility.

[ChrisColumbus]

(UPDATE: I was called away while writing this, and on finishing and posting it I now see that both Jools and Sue have beaten me to it... Please take their advice!)

I don't believe you've ever said which country you are in or how old your mother is: both could help people trying to give advice.

This is a complex situation and you need advice from some of the most expert on here like Joolsg and SueJohnson .

I'll just pick out a few things:

Duloxetine (Cymbalta, Duxet) makes RLS worse for many. In the UK this can be prescribed for depression, anxiety, diabetic neuropathy or stress urinary incontinence: if it's prescribed for depression, bupropion (Wellbutrin) or trazodone are less likely to cause RLS problems.

Co-beneldopa (Madopar) is mostly prescribed for Parkinson's but historically at least it's also been prescribed for RLS. It certainly could be making RLS worse whatever it's prescribed for.

The pramipexole (Pexola) was probably prescribed to treat RLS, and it is probably making it worse now - a process called augmentation where one has to keep taking more of it to less and less effect. At 1 mg your mother is now on twice the maximum recommended dose. Do you know how long she has been on this?

The gabapentin (Neurontin) may have been prescribed for RLS or for various other reasons. Unfortunately it will not help RLS while your mother is on pramipexole (Pexola). Again, do you know how long she has been on this?

[SevereRLS-4mom in reply to ChrisColumbus]

I just recently got into her online health records and i am trying to understand all the tests, prescriptions and treatments. Its alot and hard to put together. I am searching for a rls pro for my mom (age 77) in istanbul, turkey. There are records that go back yrs. Thank u for ur reply. I will update you all once we have found her a professional in rls.

[ChrisColumbus in reply to SevereRLS-4mom]

RLS knowledgeable doctors/neurologists can be difficult to find in many places. I've seen references to academic research into RLS at Turkish universities, but I don't know how that translates into medical practice. Ideally you need someone who is familiar with the Mayo Algorithm:

mayoclinicproceedings.org/a...

Kaarina Joolsg do we have any knowledge on specialists or even forum members in Istanbul/Turkey who might help?

[Joolsg in reply to SevereRLS-4mom]

Sadly, Turkey tends to follow Germany in RLS treatment. And they still prescribe Madopar, even though all other countries stopped prescribing that years ago.So it will be difficult to find a neurologist or sleep doctor who is up to date on RLS.

Ask first if they have read the Mayo Clinic Algorithm and will.agree to pres low dose opioids to help your mother OFF all dopaminergic drugs.

She will NEVER be able to sleep or sit until she's through withdrawal and on different medication.

As she's 77, withdrawal will be difficult, so she will probably need a low dose opioid to help her through.

[SevereRLS-4mom in reply to ChrisColumbus]

She has been taking pexola 6 months. Sh3 started with .25 then .5 then 1 mg . As the other said i need to find her another doctor because she was in hell last night all the way to the morning. She only slept 45 minutes. She was told to give blood today because her blood count is not going up. She will get results in a couple days. She has been taking madopar for yrs. But she tried to only take it in emergencies in the beginning. Now she takes it more often because she has more severe nights and sometimes goes through the day.

[LotteM in reply to SevereRLS-4mom]

You have been given good advice. No need to add.

Start with some reading. The rls-uk.org website is good and well-structured and not too overwhelming. And of course, read the Mayo Clinic algorithm, the link is in Sue Johnson’s reply.

[SueJohnson]

I made a mistake in my advice to you about your madopar when I talked about 25/100. That is a different combination from madopar so ignore it.

Instead ask for Madopar 50 mg pills and reduce by 1 every 2 weeks. Or you could ask your pharmacist if the 100 ones she has can be cut in half with a pill cutter.

[SevereRLS-4mom]

Thank you all for the info and advice.